Tonight was family night. Cousins, aunts and uncles, brothers and sisters, nephews and nieces, from all over the world got together in our house for a few hours to catch up on each others’ lives. Some had not met for years. And I have this feeling that we all won’t ever meet each other again.

Someone gave a speech remembering each of the many family members who had died in recent years. It was hard to take, although there was also hope, with some family members, who had been told they’d die, surviving and with new family members being born. (I’ve been trying to find a similar story in The Dead by Joyce tonight, but it’s just too late to do this now.)

Pádraig had a great time meeting his cousins, aunts and uncles. He had a bit of the party food and a bit of a bottle of Coronas, while he was listening to and watching around the buzz of this latest big family meeting in our house!

I have a plan for New Year’s Eve. I will sit outside, with a glass of brandy and a cuban cigar. I will blow rings of smoke into the air and watch them disappear. From time to time, I will take a bit of the brandy and feel it going down into my stomach creating this burning, warm feeling.

On the first day of the year, I will get up, have a cup of coffee and drive down to the 40 foot. I will meet a few friends and together we will go for a swim.

Leaving the old behind and greeting the new will both be pretty intense. I want to mark that changeover to the new year, because it will mark change in my life.

Some of my German family is over for a visit. Just a few days. We watched old photographs together on a big TV screen. I took a copy of the USB stick the photographs came on. A lot of work had been put in to their preparation. I will keep that copy, but I don’t think I will watch the pictures again. Looking back is hurtful.

Today being Thursday, Pádraig had his friends over for visit. At lunch time, one of his best friends stopped by on the way to the airport, a one way ticket to Nepal in his pocket. Later in the afternoon, another two friends stopped by sharing stories about their lives and adventures.

I’m thinking. What will be our next adventure?

I was going to write something about onions, comfort zones and the illusion of control (my favourite topic:), stuff that has been on my mind for some time now. Alas, it’ll require some quiet time to do that. And quiet time is in short supply at the moment. And when it’s available, it’s too late in the day and I can’t get my thoughts together.

So instead, here is a piece about the miracle of Christmas or rather: a Christmas miracle. Whether you believe in them or not, this one really happened. And it wouldn’t have happened without some divine intervention.

After months, if not years, of waiting, of first appointments and follow-up, it took just a day or so for a specialist in the Dublin CRC Assistive Technology Department to build a new table for Pádraig that has a build-in sunk-in button that is connected to a bleeper giving him (and us) auditory feedback when he uses it.

Pádraig has been using a button giving this auditory feedback for some time now, but mostly with his left food – which made the whole exercise logistically a bit complex. In addition, this new button can also be connected to the Tobii Dynavox or any other electronic device and, we hope, with the help of a splitter (which I will be looking for) to the bleeper and the Tobii at the same time.

So, here we are, practicing with the new, invisible, always available, button. One bleep for ‘yes’, two for ‘no’, three for ‘I don’t know’, a bleep to make a selection, a number of bleeps to solve simple maths problems. And then we thought to introduce an ’emergency bleep’, the ‘SOS’ bleep, the ‘Mayday Mayday Mayday’ bleep. In other words: loads of bleeps until someone reacts and comes to the rescue.

It’s absolutely fantastic. And great fun. (In order to keep the video short, this is just an extract of the session we had – and Pádraig stopped the ’emergency bleeps’ by himself when I asked him to do so. These bleeps are totally controlled by him.) You could see how Pádraig is enjoying the access to a device that is there when he needs it. That he can control. One for which he doesn’t need anybody to offer it to him to answer a question. I think he was quietly over the moon. And he couldn’t stop himself having me on with his provocative ‘bleeps’ answering (consistently) the opposite to what I would have expected. Great fun.

But also quite frightening. Because: seeing the difference that this is making to him, knowing that there are people around the corner from where we live, them knowing how dependent Pádraig’s well-being is on such a device, well knowing all this and more – how could it take so long to make it available to him. What a difference it would have made to him, his life and his health, if someone had followed through on this two years ago.

They had some ‘experts’ on in the morning giving advice on how to deal with difficult situations in your life: break the problem down into manageable chunks, sleep well, eat well, exercise.

There was only one way to deal with this – and that had nothing got to do with any of the advice given this morning by the experts on the radio.

A friend of Pádraig’s one evening came and brought some incense and an oil lamp. It was dark outside and in Pádraig’s room. He prepared everything to sit on the floor beside Pádraig’s bed to meditate with Pádraig. The door to the kitchen is just a wooden sliding door which isn’t anything proof, meaning light, smells and noise pass from the kitchen into Pádraig’s room. Someone in the kitchen said ‘sorry, I’ll be making a bit of noise here while I’m cooking but I’ll be finished in a few minutes’. To which Pádraig’s friend answered ‘don’t worry, you can make as much noise as you like, it won’t make a difference to me’.

I will try to be a bit more like this. I can do what I want to do, when I want to do it, what I need to do almost independent of the ‘noise’ around me. I don’t need the ‘ideal’ circumstances to allow me to do this. They might never materialise. I can meditate in the middle of kitchen chaos, I can run when it rains, I can work on stuff others don’t believe in, I can be nice and reasonable when someone is driving me nuts. Sure, there will be setbacks and I’m convinced that friend of Pádraig’s didn’t manage immediately to meditate amidst the chaos of life. It takes practice. I’m starting to practice tonight.

If you’re not Irish you mightn’t be familiar with Dustin The Turkey. After he came last (or second last?) in the Eurovision Song Competition representing Ireland, his popularity slightly declined. He really didn’t ever like Christmas and was always a bit nervous around this time of the year. Understandably.

This year, we had the best turkey ever. We were told it was a happy turkey from a real farm who had roamed the fields and the woods all his life. Happy or not, Christmas brought an end to his life – which is kind of sad. There is this thought in my mind that ending an unhappy turkey’s life is maybe less cruel than ending that of a happy turkey.

The uncle from America, turned vegetarian recently, had, of course, his own opinion about killing animals and eating them….

There was definitely magic in the air at Dublin Airport today with so many people arriving home for Christmas. When Pádraig and us got into the arrivals hall, we thought ‘wow’. The sound of that Gospel Choir was pretty unbelievable. The energy, the joy, the sheer drive and believe behind their songs and their singers was really special.

We went there to meet Pádraig’s uncle from America who has the habit to arrive, like Santa himself, on Christmas Eve.

A few decades ago, it all was the other way around: I was coming to Dublin and he picked me up. It was my first time to meet him and his family. The evening and the night are now a firm part of our family’s folklore and has been remembered at weddings and funerals and, just last Wednesday, on ‘Talk to Joe’. Today, it was and altogether more ‘civilised’ affair. He brought with him best wishes, cards, and presents from people we barely know. Love around the world! And peace on Earth.

I’m having trouble getting into the Christmas spirit. Whatever that is. Instead, I am getting this urge of making long overdue decisions. Some of them I wanted to make when Pádraig’s accident happened. But, everybody knows and Dr Google will confirm that for you: never take important decisions at moments of life-changing events.

My best friend once said: nobody ever changes, unless they really have to. And that is at breaking point. Decisions are too risky otherwise. Especially the big ones.

I am taking a precaution: I’ll try to get some sleep because rule number 2 says: never take important decisions when you are exhausted. Although, if that doesn’t work out (getting some sleep), I’d say rule number 1 will kick in automatically, because I’ll find myself closer to that point where taking a decision won’t be optional.

There is a third rule. Before you introduce any drastic changes, get rid of ballast and clutter. So over the coming days (hopefully) and weeks (more likely) I will get rid of stuff that I feel captures my life. Books, pictures, clothes and other stuff important to no-one else but myself – and I won’t have the time to read those books, looks at those pictures, or wear any of those clothes filling up that wardrobe to a point where it no longer closes.

Pádraig went out food shopping today to one of those gigantic supermarket to get what we will need over the Christmas. Another pretty good thing to be able to do. We’ll have a full house over the coming week. Family will be joining us from Europe, the US and Australia. It’ll be mad, chaotic, great fun, sad (because of all the people missing), never-ending (like the turkey being served, again, on Stephen’s Day:), and (occasionally) happy. Just like Christmas is supposed to be.

Yesterday was the shortest day of the year. Following months of days getting shorter and darker and more miserable, with each night getting longer, times are now changing and change is on the way! Brighter times are on the way!

Just in case you’re not living in Dublin – check out the new Luas, Dublin’s tram, blocking the view of the city’s humongous Christmas tree on the picture above. The Luas is now running down O’Connell street, turning left into Parnell Square, causing some incredible traffic jams and pedestrian pile ups!

Pádraig had another lovely dog visiting him yesterday, together with his owners (yes, the attention was on the dog:). Unfortunately, I didn’t manage to take a few snaps, but it was obvious how well Pádraig got on with the dog. I started to think (and I haven’t really be a dog-person) that if we found the right dog, with a bit of training as a companion or a therapy dog, I’d almost go for it. Two of his friends recommended a Rottweiler because of their gentle character. Gentle character!!??? Just shows how little I know! I had that picture of Rottweilers in my mind chasing away thieves from expensive properties, fletching their teeth. But gentle? Apparently so!

Every so often these days, memories are seeping through from four years ago when we had just ‘furnished’ that small apartment in Hamburg’s Forbacherstrasse and Pádraig’s lungs weren’t doing that great. He could not eating, he could not drinking, he could not move’, he was not communicating, he could not smell, he could not taste, and he was on a respirator.

Today, Pádraig is on the verge of taking control of his life back, at least to a degree, and he certainly wants to and makes that very clear. What a change that is and how much brighter the future looks today than it did back then, only four short years ago.

One of the most important things he is able to do, and he did it yesterday very obviously, which made it a first, is to do things out of his own initiative, not something anybody had asked him to do, but something he did because he wanted to. We had talked in the morning about the winter solstice and then, in the evening, when he had his dinner, they were reporting on it on the telly. When he heard it mention, he turned his head around to look at the telly. Small move, BIG independent, not-prompted decision making with subsequent initiative.

Pádraig went out to town to see and experience a bit of the crazy Christmas atmosphere. While he was out on the town, I tried to connect by driving the car through impossible traffic.

I’m tired but I am afraid I’ll have to leave it here:)

For some reason, I’ve been feeling edgy for the last few days. I have this list of stuff to do. A list I put together last week. The list is a long as my arm. All important things. All need to be done. Not tomorrow, not next week or next year, but now. Urgently.

The problem is: no-one, not the best organised or capable person in the world could possibly do all those important and urgent things on that list. It’s impossible. Yet, I keep working on it. Trying not to become overwhelmed. And keep going

Pádraig went back to the CRC today to get a new table with an integrated switch. If it works as planned, it’ll be fantastic.

It became so clear today that what stands in Pádraig’s way, what makes it so difficult for him to communicate, is not a lack of ability. The barrier is access to services that would assist him to overcome whatever restrictions there are.

It’s as simple as that.

Knowing this and not providing him with this access is against any common sense. In fact, I would say it’s denying him his basic human right.